Tuesday, June 11, 2013

Lesson learned....

 
 
DO NOT complain about the roller coaster...
 
Because it will get SO MUCH WORSE!!!!
 
Dang it!
 
As discussed this morning:
We fought pain today.
We fought headaches today.
We fought backed up bowels today.
Nathaniel continued to work through leg weakness today.
Through the storms of the day I felt so alone and desperate for God.
And we were all so exhausted today!
 
To all of that...
 
We added nose bleeds to the headaches. Random, gushing for no reason nose bleeds. We are on nose bleed number 3 today.
 
We added terrible stomach cramps, vomiting and random movements to the backed up bowels. He has been a BLAST of bodily fluids today... and his bowels are normal yet!
 
A ridiculous roller coaster ride on what they are going to DO with us. At first this morning the doctor in 3 Surg was talking about discharging us today. I was like, "NO!" He can't stand yet, he hasn't moved his bowels, he still has a crazy wound on his back, he hasn't been released from neurosurgery yet, he still had a Foley catheter and he hadn't even got a PT evaluation yet! The doctor thought I was crazy, I am sure. He told me we could come back for out patient rehab... um... NO! we are 250 miles away ONE WAY... None of this was the initial plan. So I rolled my eyes at him (yes, I really did), and hit my knees in prayer.
 
Around noon we FINALLY got a PT evaluation!!
 
 
I REALLY liked the PT that worked with Nathaniel today.
 
 
She was funny, she was kind, she worked him hard and he thought she was playing the whole time!
 
 
So after this evaluation we have a walker, we have a grab belt for him to help balance him and she moves around. And we have permission to let him walk a little with 2 person support. BIG,
HUGE gains for him today in this!! HUGE praises to the Lord for this!
 
 
We were also told that Nathaniel, now that he can get up, should take ALL of his meals sitting up in the chair, not in bed!
 
 
 I posted this cute picture on Instagram around 2:30 to show Nathaniel's AWESOME progress. Within minutes of this picture Nathaniel had chocked on his meal, aspirated and given himself a bloody nose. Lunch went downhill fast and so did the rest of day. This was the last of the good for Nathaniel today. Poor little warrior boy!
 
Shortly after all of this went down the Resident from Rehab came down to do an evaluation. She talked to us for a while and it sounded like she wasn't thinking we could get into the In Patient rehab, which echoed the floor doctor from earlier, but she did say that she would bring down the Rehab doctor for a full evaluation.
 
Nathaniel and I, both being tired, took a little nap at this time.
 
Around 4 o'clock we were woke up by the Rehab doctor. I have to say, this is a FUNNY guy. He talked to us, he evaluated Nathaniel, he tried to be tactful in his assessment of CCS, especially "backwards" areas until I called him on it and told him to be candid! Interestingly, he agreed with me on many things, including our inability to get fabulous therapy for recovery at home. It isn't that I don't love our therapists, but what could compare with living therapy for 24 weeks in such a focused setting? We also talked about the wound on Nathaniel's foot that has been there for over 8 years and he was determined that something better could be done for that! Another area we discussed were Nathaniel's braces. We kind of didn't agree on this, but I have decided to have an open mind and talk to God about what is best. What do I know? I am just a researching momma, he is the doctor that plays with this stuff everyday (and he seems pretty high up on his game too!) He was able to give real reasons based on Nathaniel's body for his brace recommendations, not the stupid "we do this to Spina Bifida" answers. That I can respect! At the end of the evaluation he said that he was going to try his best to get Nathaniel in for 2-4 weeks, pending insurance. I was much more optimistic after talking to him. So.... take it to the throne my friends! I REALLY think being in this program is going to be the best thing for Nathaniel, so please storm the throne of God, if this is his will, that insurance won't be an issue and Nathaniel will get in!
 
About the time we were finishing with this doctor our afternoon nurse came in and told us they had just ordered an Emergency MRI to get higher resolution pictures than we got on Saturday. We had no notice of this, no one had discussed it and we were very surprised. Right then the neurosurgery team walked in and they were just  as surprised as we were. They said that they hadn't got a report on Saturday's MRIs yet, so no they hadn't ordered anything. After a bit of frantic scrambling around, it was determined that radiology actually ordered the new MRIs, based on what they saw from Saturday's images. I am really concerned about what this means. At this time all we know for sure is that they took higher resolution pictures than they did Saturday, and that they spent about 15 minutes imaging the brain tonight, and about 15 minutes on the spine too. Praying for swift answers on this tomorrow, as I don't know how long I can keep this information without exploding!
 
Once we got back into our curtain from MRI it was about 6:30 and we decided to do a few things we had been trying to get to all day long. So the nurse took Nathaniel's Foley catheter out, and also gave Nathaniel his fleet enema... then left. Like really, really left! She went on dinner break with Nathaniel on the commode, a two adult transfer, and no instructions to us at all. Seriously? Let me just say I was NOT a happy camper, I did loose my grace for a few minutes and evil momma bear came out, and the end result of this stunt by the nurse was one VERY messy Nathaniel and another bloody nose. Boo Hiss...
 
After his sponge bath Nathaniel wasn't interested in much of anything. He laid in bed, refused food and barely  watched  TV... so very unlike MY Nathaniel. So I let him go to bed early, especially after last night when he really didn't sleep. Later in the evening, when just turning over in bed, Nathaniel got yet another bloody nose for no apparent reason. That made 3 nose bleeds in one day... which got me a midnight conference call with a doctor! Sigh. Life is an adventure!
 
So... I am so exhausted, I hope that all made a bit of sense!
And I wanted to wrap up with the BIG prayer requests for tonight....
 
*For the findings on the MRI, that the doctors may read it well, that Dr. Sun understands what to do about the findings, and that the neurosurgery team and the floor team get TOGETHER and come up with the best plan for Nathaniel!
 
*If it be God's will, that we get into the Inpatient Rehab Department.
 
*For the random headaches and phantom nose bleeds. Please Lord, show the doctors what is happening and what should be done about it.
 
*For Nathaniel's continued strength and GREAT spirits!
 
*For this weary, lonely momma to stay on God's path, NO MATTER WHAT!
 
As always, thanks for reading and
WE LOVE YOU!!!


1 comments:

Katie K. said...

Gretchen,
I don't "know" you, but your blog was linked from a mutual friend via SLOCountyMommies. I know that you know this already, but it never hurts to hear again. Your dedication to your God and family is inspiring. I have been praying for your son (and you) daily. As I'm dealing with my own son's disability (deafness) you are inspiring to me. I just felt compelled to share that with you. Gods Blessings,
Katie Kahler